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Wednesday, 2 November 2011

If Anyone Were Stupid Enough to Televise My Blog

It would be a cross between House MD and Martha Stewart. It would have to be shown weekly rather than daily, as I don't do much in an average day. Let me tell you a little more about my day-to-day life:

In addition to my GP, I see 14 different specialists at six different hospitals. I am currently procrastinating about adding a further seven specialists to my team.

I use 19 different medications daily.

It is rare for me to be able to leave the house more than once or twice a week. These trips are often based around medical appointments, though I do try to include fun things when I'm out, such as buying flowers, visiting the greengrocer, or stopping for coffee. If I'm really lucky, I might make it out to a craft shop, where I could happily spend an hour just looking at things, and stroking the various yarns.

What I can do varies daily, depending on the severity of my usual symptoms, and depending on which joint(s) are least stable/most painful.

I love to make things. It gives me a feeling of great satisfaction to have created something beautiful, whether it's food, a knitted item, or even just some labels for my kitchen. There are days when I feel that I am no use to anyone. Sometimes I can go for days without having a conversation with anyone except my husband. Creating things makes me feel as though I am contributing something, however small, to the world.

When I am not well enough to make things, I like to plan. OK, so I might not actually be able to redecorate the guest bedroom, or reorganise the study, but I can pick out colour suggestions, choose furniture and come up with some pretty neat storage solutions. Thankfully, I have a husband who is happy to help make my ideas reality!

When I am well, I am often able to potter around the house, doing little bits here and there. I like to stay on top of the housework (I'm lucky in that I have lots of help) and like to have systems for everything so that things can run perfectly well without me. This works well, and is necessary for the times that I'm in hospital (about two weeks out of every six). Having systems is not only invaluable at home, but is literally a lifesaver when I'm admitted to hospital in an emergency. I'm not always well enough to give doctors all the information that they need (including numerous severe allergies to foods and medication), so being able to hand over a folder that tells them everything they need to know is such a relief.

Not really TV material, but there you have it - maybe I'll introduce you to some of the systems that I use to make life easier for myself and for my husband as a consolation prize!

About Me

Despite my best efforts, I still spend about 1/3 of my time in hospital (not including outpatient appointments). I have a genetic disorder that affects my joints, my digestive system, my autonomic nervous system (control of blood pressure, heart rate, temperature, and other 'automatic' functions) and hearing. I also have severe asthma. The combination of these things means that I'm almost always exhausted and in pain - this is how I live my life. There is no cure that will restore my quality of life to 'normal', so I have to find quality in what I have. I like things to be organised (makes life easier), love to be surrounded by beautiful things, enjoy knitting, reading and baking. As with all things, however, nothing is perfect, and we all make compromises as we try to make the best of what we have.